New MELD (Kind of)

   I had my labs done yesterday. My MELD dropped 2 points. It was a bit discouraging in the midst of everything else that was going on. I also managed to get my ultrasound scheduled for this morning. I figured that since it was scheduled for 7:15 in the morning, it would go fast and I'd be out in less than hour. While the technician performed her task, I told her about my blood clot in the portal vein and asked if she could look at it. I was curious about its size. When the test was nearly done she had trouble looking at the whole area. She excused herself and went and got her boss hoping he would have better luck. He seemed a bit bewildered and asked, "You've had a TIPS procedure?" We told him yes and let him know it was at the beginning of the year. He explained that he couldn't see any blood moving through the portal vein and it looked like the TIPs procedure wasn't doing its job.
   Some of you might remember the TIPs was put in to help me with my ascites and to re-route the blood flow that was alarming the doctors because the varice in my stomach were dangerously close to bursting. The tech didn't like what he was seeing and admitted that the equipment they were using wasn't picking up the images the way it was supposed to because it was old. He took his readings to the radiologist and the radiologist called one of my doctors to tell him what was going on. Unfortunately it was still early and we had to wait around for a couple hours. Lois headed back to work so I decided to go to my transplant clinic and wait to hear from my doctor. I figured if I was there and he showed up then he could come out and talk to me. Meanwhile Lois had decided to turn around and come back and wait with me. I felt bad because she had taken so much time off yesterday. Eventually my doctor called and my nurse set up a CT scan that he wanted. Now we have to wait for the results. They told me it it would be 24 to 48 hours. I am hoping to hear something on Friday, but I'm guessing it won't be until Monday. This has really been a lousy couple weeks. I have 10 days off, three days have already passed. I am going to vegetate for the next 7 days. Maybe. I don't know yet. I'm going to be housebreaking a puppy. More on that later.

Latest MELD

   I had my MELD done today. My score dropped from 20 to 19. As I've said before, Lois and I can pretty much tell whether my score has gone up or down by looking at the numbers. I usually take the train to the hospital, have my blood drawn and then go downtown and catch a movie. I later call the lab and get my numbers and call Lois so that she can run them through the MELD calculator. We both knew that it had dropped.
   I may have gone down a point, but I am still in the second category from the top. We are still waiting for my score to rise, but it is getting harder to get through each day. Some days are worse than others. I am holding up though and next month I will be listed for three years. It is hard to believe so much time has passed by since we found out that I was sick. The good thing is that I am still able to work.
   I don't have much else to say. After we returned from vacation I had a pretty hard time. I was extremely exhausted and the swelling in my feet was killing me. I wear a size 9 1/2 to 10 tennis shoe and I had to go and buy a size 13 just so that I could get something on my feet. Tomorrow I go back into clinic and once again the swelling has gone down and I won't have much to show the doctor. That's just funny. Kind of like them bringing Dallas back to air. Well...that is all.

New MELD Score

I had new labs drawn on Monday. Ever since my MELD score went up three months ago I have anxiously been waiting for my next doctor appointment. For three months I have been walking around on pins and needles waiting for this appointment. Actually it isn't so much about the doctor visit as it is having my MELD score checked again. I usually have my labs sent to me by mail and I use the UNOS MELD calculator to check my new labs so as not to bother my coordinator. If I don't, then I am on the phone 3 days later and I quickly become a nuisance until I track down someone who can help me.
Anyhow, I just received my labs in the mail and I am now at 21. I definitely am moving up the ladder.
Here is the MELD range:

Lab Test Frequency

    * MELD score greater than or equal to 25; Labs needed every 7 days

      * MELD score 24-19; Labs needed every 30 days

      * MELD score 18-11; Labs needed every 90 days

      * MELD score less than or equal to 10; Labs needed every year

Meanwhile I am very tired. I find myself falling asleep more often during my days off. I have also noticed that I am running out of breath a lot faster than I used to. I think I am just physically weak.
Posting has also been hard to do. I don't seem to have it in me anymore. I have been trying to keep the photo journal going though, but I haven't had anything to post for the past couple of days because I've been sleeping. It's kind of hard to take pictures with your head buried in a pillow.
So there it is. Good news depending on how you look at it. I am happy about it.

Lately I have been following some blogs in the liver community of some people who are not doing as well as I am. They are a lot sicker than I am and I count my blessings that I am doing so well. I hope these people don't have to wait much longer and that they all receive their transplants soon. My thoughts and prayers go out to each of them.

Nine

For two years now I have been slowly getting sick. In those earlier days before they started bombarding me with medicine, I would get awfully sick. Sometimes I would curl up on my bed in a ball and cry out in pain. I had no idea what was happening to me. The pain would come and go and I just assumed I was sick. As it turned out I was sick. Very sick.

Lately I have felt a small change. Yesterday I woke up nauseated, thinking I was going to be ill. That is a symptom I haven't had for a very long time. I have also been very tired lately. That symptom is nothing new. I have been tired all along. But this has been a new kind of tired. It carries a different weight to it and it has been relentless.

I had new labs drawn on Monday. We are still checking my INR for the coumadin. This week we also checked my MELD score. The last time we checked it -- three months ago -- my score was 11. My new coordinator decided that we would wait until January before we checked it again, but then Lois talked to her about how often it changed and my coordinator agreed to let me get it checked again. Today she called to tell me that the coumadin is looking good and that my MELD had risen considerably. It was 18.

As I thought about the number, knowing that 23 to 25 can be a good average range for a transplant in this region, my heart started doing pitter-patters. And then my coordinator said something that I could barely comprehend. "Your placement on the list puts you at number nine, or thereabouts."

I understood what she meant by "thereabouts" because thereabouts implies all the factors involved in a MELD score. It is the derivative of every other person involved. It is weight and size, it is a score of someone who is at 40 and someone who is at 20. It is everything that happens between now and then. Illness. Infection. Death and dying. The list goes on.

Listening to my coordinator I suddenly realized that I was crying. Time seemed to be catching up. My thought was, "I am closer. This is happening."

I found Lois and told her everything.

Hugging each other, Lois asked, "Does this make it seem more real now?"

With my heart breaking, I could only nod yes.

"We're going to need you to get a little more sicker."

My MELD score has dropped 3 points. This is supposed to be a good thing. It means I have a while yet until transplant.
This little bit of information has brought me some disappointment. It feels like such a step backwards. I suppose I am just tired of it all.
As I've mentioned before, because the transplant surgery is so high risk, doctors don't like to do one until it is absolutely necessary. Most often this happens when the patient is very, very ill. Another reason they wait so long is because the organs are just not available and they really have no choice. Hence the long waiting list.
After I had my endoscopy/colonoscopy on Tuesday, the doctor informed me that everything looked good. No polyps. No lesions. No tumors. The varices in my esophagus stopped bleeding a year ago and I don't appear to have a problem there any more but the varices are now in my stomach and they will have to continue to monitor them.
My transplant coordinator (from now on let's just call her the TC) called me on Thursday and said that my heart and lungs and all that stuff looked relatively normal. The only thing they saw in the bubble echo was that I had a little heart murmur which we were already aware of. She was going to run that by the doctor to see if that was something they wanted to fix.
So basically all these tests came up with nothing to explain away how I've been feeling. I still have awful stomach aches and the shortness of breath doesn't seem to raise any flags. They don't feel that ascites is a factor — which I find boggling. Especially since ascites can put pressure on the diaphragm and make it difficult to breathe. According to the contrast CT scan I had two weeks ago, they didn't see any ascites around the abdomen. The doctor’s diagnosis was that there was maybe a little ascites. Perhaps I am having sympathy ascites.
I also learned that I am starting to get jaundice. Up until now the yellow has been hard to detect because of my skin color. He saw it under my tongue and in my eyes.
And so, after my endoscopy the doctor said that with my new MELD score, it was likely I was good for another year or so before transplant. That seems like a long time considering it has almost been two years since this all started. The way the doctor talked to me seemed a little disconnected. I felt like a man who just brought his car into the service station for a tune up. "Everything looks good Mr. Kyle, bring her back in about 6 months."
"Okay Bob, see you in 6 months."

(Tick tock, tick tock, tick tock)

Meanwhile my thoughts have started running random. I'm thinking about my talk with the TC last week.
"Oh that's a good score. There's nothing wrong with that. You want to hold on as long as you can and they don't want to do transplants too early because of all the risks involved."
She's offered me some encouragement and then she drops the ball when she brings mortality figures into the picture.

"What the Ef!"  I'm thinking to myself.  "And yes, I know the figures. I've known since March 15, 2008. It was a Saturday. The day I got out of the hospital and went home and got on the internet."

Maybe I just need a long vacation. I think I've got a little time now that I have this new window to look through.